On November 14, 2007 our healthy and athletic son was diagnosed with advanced stage IV Burkit’s Lymphoma and Leukemia. This blog is a journal of his courageous journey as he battled this aggressive cancer. With the grace of God and the help of an incredible community, Tyler went into remission in August, 2009. He is now a strong and healthy student at The Ohio State University.

Tuesday, April 7, 2009

17 Years

18 months ago Tyler received his drivers permit. We went driving, but he did not feel good. We came home, and he went to bed without dinner. The next day he went to school, but came home and went to bed with a sore stomach. The stomach flu had been through the family, so we assumed he had picked up the bug.

After four weeks and three doctor visits, the conclusion was irritable bowel or possibly colitis. On November 14th we walked into Children's Hospital to meet with the GI specialists. Within a few hours we were meeting with oncologists, signing waivers for high dose chemo, reading page after page of potential side effects, and learning the sights, sounds, and smells (very distinct smells) of the pediatric cancer floor called J-5.

Those first days we walked around in a daze. Late at night I would roam the halls, and see other parents doing the same. But I was afraid to talk to them, as those speaking to them would allow their child's cancer to infect my child. Kathy and I would trade off staying on J-5 with Tyler. On the nights I was at home, I slept in Tyler's bed. It just felt right, like I was still there with him.

On Thanksgiving day, Tyler earned a few hours off of J-5. The Thanksgiving dinner we had packed to bring to Children's was quickly opened at home. It was a great Thanksgiving. But as the clock continued to move, we had to load Tyler back into the car to return to J-5. During this fight, there were six very distinct times when I felt like someone was driving red hot knives through my soul. Placing Tyler into the car on Thanksgiving day to return to J-5 was one of those times.

For a while Tyler and Kylee Bornhorst were the only teenager on J-5. But then Rob Kemp and Brett Workman arrived. And then we became connected to others around the country. Sinjin Andrukates, Christian Barker, Chase Donnell, and A.J. Piniewski. But things turned bad as winter continued. Tyler was fighting, but the battle was turning very ugly. Then Sinjin had a major relapse. And then Christian, Chase, and A.J. all passed away. Then Rob, followed by our dear friend Brett. For the first time in my life I understood there are times when giving all you have to give, doing everything right, simply might not be good enough.

I called every doctor, researcher, hospital, and pharmaceutical company with any information on Burkitt's. We went to other hospitals, looked into other treatments. As we got through spring, things began to improve. There were still set backs and compromises on the treatments, but progress was being made. On April 7th, Tyler celebrated his 16th birthday. By summer we were seeing light at the end of the tunnell.

By late July Tyler was in remission and had completed all treatments. He turned his energy toward school, and by August had catch up with the classmates he had left a year earlier. The doctors said Tyler would need to continue home schooling, because he would not have the strength or the stamina to handle school full time. But he has carried a full load, missed only one day, and is getting the best grades of his life.

As Christmas came, Tyler agreed to visit J-5 to deliver gifts to the kids. Although we were still going to the cancer clinic, but this was his first time back on J-5. It was not easy to see all the bald heads and IV poles. Back to the sights, sounds, and distinctive small of J-5. It took a lot of courage, but it was an important step.

This winter again brought bad news. Our main mentor and encourager, Stef Tarapchak, passed away. He was followed by Cameron Brown, Trey Martins, Mason Woods, and Will Ellis. And then the relapses of Mason McLeod, Joe Friend, Matthew Barr, and the devastating news of our friend Ryan Salmons.

But there was also good news. Sinjin and Tristian were fighting back their relapses. Kylee was back in school and doing great. Nicholas, Jana, Jake, all fighting Burkitt's, were in remission.

And then there was Tyler. The doctors told us he would not have the strength or coordination to play sports for a year. But Tyler did not listen. So he played basketball on the Dublin rec league, became a basketball ref for the younger age bracket, and two weeks ago made the high school volleyball team. Last Friday he began taking SCUBA lessons. Now 8 months into remission, there is not a single indication of cancer. By mid summer he will be out of the high risk group for relase.

Today, April 7th, 2009, Tyler is healthy and strong. He walked through the door, coming home from a volleyball game, with a full head of hair and a high grade point average, to celebrate his 17th birthday.

18 months, 27 funerals, 100's of new friends, 1,000's of supporters, and millions of prayers.

This victory took an incredible amount of strength and courage from Tyler. But it is also the result of the prayers and support of 1,000's. We will never be able to thank you all for everything you have done. And above all, we thank Jesus Christ. I do not know why this happens, or why some live and others do not. I frankly do not get it. But I know everyone of these young people have changed lives, have made an impact on our world.

Celebrate every day together. Take nothing for granted. Live a life worth living. And always fight to win.

Happy belated birthday Tyler! I want to see a picture of this full head of hair I just read about. I wanted to let you know that next week is my last week as a nurse on J5. I have accepted a nurse practitioner position at Cincinnati Children's that starts at the end of the month. I hope you post Tyler's volleyball schedule because I've been playing since middle school and I'd love to see a game! Take care! Miss you guys!!Nurse Jodi P

I got to meet you at Barney Hop at Dublin, Ohio and what a healthy young man you are, it really imspires me to see cancer has been beaten, my grandson Colyn McDaniel is the love of my life, i will never forget his rough road he had and like you, you cant tell no sign of cancer, please pray for him next month his scans will be clear. I read your blogs and your dad, and your mom is so sweet, you all are a great family, wishing you all a Happy Easter! Colyn (mama) www.caringbridge.org/visit/colynmcdaniel